"Everyone needs a Deb": what Australian indigenous women say about breast cancer screening and treatment services.

BACKGROUND: Breast cancer continues to be the second most diagnosed cancer overall and the most diagnosed cancer for women in Australia. While mortality rates overall have declined in recent years, Indigenous women continue to be diagnosed at more marginal rates (0.9 times) and are more likely to die (1.2 times). The literature provides a myriad of reasons for this; however, the voices of Indigenous women are largely absent. This study sets out to understand what is happening from the perspectives of Australian Indigenous women with a view to charting culturally safer pathways that improve participation in screening and treatment by Indigenous women. METHODS: This co-design study was conducted using semi-structured, in-depth interviews and focus group discussions. Recruitment of study participants was via snowball sampling. Participants were subsequently consented into the study through the Aboriginal Health Service and the research team. Interviews were audio recorded and transcribed verbatim, and data coded in NVivo12 using inductive thematic analysis. RESULTS: A total of 21 Indigenous women and 14 health service providers were interviewed predominantly from the same regional/rural area in NSW, with a small proportion from other states in Australia. Six major themes were identified: Access, Awareness, Community and Family, Lack of control, Negative feelings and associations and Role of services. CONCLUSION: To improve access and participation of Indigenous women and ultimately improve mortality rates, breast cancer services must explicitly address cultural and community needs.

Comparison of Study Quality as Determined by Standard Research and Community Engagement Metrics: A Pilot Study on Breast Cancer Research in Urban, Rural, and Remote Indigenous Communities.

The purpose of this review is to compare research evaluation tools to determine whether the tools typically used for assessing the quality of research adequately address issues of Indigenous health and culture, particularly when the studies are intended to benefit Indigenous peoples in urban, regional, rural, and remote settings. Our previously published systematic review evaluated studies about breast cancer using a modified Indigenous community engagement tool (CET). In this study, we evaluated the same studies using two commonly used tools: the Critical Appraisal Skills Programme (CASP) for qualitative research; and the Effective Public Health Practice Project (EPHPP) for quantitative research. The results were then compared to ascertain whether there was alignment between performances in terms of engagement and the CASP/EPHPP metrics. Of the 15 papers, 3 papers scored weakly on both metrics, and are therefore the least likely to offer reliable findings, while 2 papers scored strongly on both metrics, and are therefore the most likely to offer reliable findings. Beyond this summation, it was clear that the results did not align and, therefore, could not be used interchangeably when applied to research findings intended to benefit Indigenous peoples. There does not appear to be a pattern in the relationship between the reliability of the studies and the study settings. In order to address disparities in health outcomes, we must assess research through a typical research quality and cultural engagement and settings lens, ensuring that there is rigour in all aspects of the studies.

Improving breast cancer outcomes for Aboriginal women: a mixed-methods study protocol.

INTRODUCTION: Breast cancer is the most commonly diagnosed cancer affecting Australian women, and the second highest cause of cancer death in Australian women. While the incidence of breast cancer is lower in Aboriginal women than non-Aboriginal women, the mortality rate for Aboriginal women is higher, with Aboriginal women 1.2 times more likely to die from the disease. In New South Wales, Aboriginal women are 69% more likely to die from their breast cancer than non-Aboriginal women.Co-design is a research method recognised to enhance collaboration between those doing the research and those impacted by the research; which when used with Aboriginal communities, ensures research and services are relevant, culturally competent and empowers communities as co-researchers. We report the development of a new protocol using co-design methods to improve breast cancer outcomes for Aboriginal women. METHODS AND ANALYSIS: Through a Community Mapping Project in 2018, we co-designed an iterative quantitative and qualitative study consisting of five phases. In Phase 1, we will establish a governance framework. In Phase 2, we will provide information to community members regarding the modified parts of the screening, diagnosis, treatment and follow-up processes and invite them to partake. In Phase 3, the research team will collect data on the outcomes of the modified processes and the outcomes for the women who have and have not participated. The data shall be analysed quantitatively and thematically in Phase 4 with Aboriginal community representatives and reported back to community. Lastly, in Phase 5, we evaluate the co-design process and adapt our protocol for use in partnership with other communities. ETHICS AND DISSEMINATION: This study has ethics approval of the Aboriginal Health and Medical Research Council ref:1525/19. The findings will be published in the literature, presented at conferences and short summaries will be issued via social media.

What Is the Evidence Globally for Culturally Safe Strategies to Improve Breast Cancer Outcomes for Indigenous Women in High Income Countries? A Systematic Review.

The aim was to systematically assess the evidence on whether cultural safety affects breast cancer outcomes with regards to care for Indigenous women in high income countries. We conducted a systematic review in accordance with PRISMA guidelines of peer-reviewed articles in Medline, EMBASE, CINAHL, Scopus, Web of Science, Proquest Sociology and Informit Rural health database and Indigenous collection databases. Key inclusion criteria were: adult female patients with breast cancer; high income country setting; outcome measure, including screening, diagnosis, treatment and follow up care. A total of 15 were selected. We developed a Community Engagement assessment tool in consultation with aboriginal researchers, based on the National Health and Medical Research Councils' community engagement guidelines, against which studies were appraised. This novel element allowed us to evaluate the literature from a new and highly relevant perspective. Thematic analysis of all 15 studies was also undertaken. Despite limited literature there are evidence-based strategies that are likely to improve outcomes for Indigenous women with breast cancer in high income countries and indicate that culture makes a positive difference. It is also clear that strong Indigenous community leadership and governance at all stages of the research including design is an imperative for feasibility.

A multistate quality improvement program to decrease elective deliveries before 39 weeks of gestation.

OBJECTIVE: Nonmedically indicated (elective) deliveries before 39 weeks of gestation result in unnecessary neonatal morbidity. We sought to determine whether implementation of a process improvement program will decrease the rate of elective scheduled singleton early-term deliveries (37 0/7-38 6/7 weeks of gestation) in a group of diverse community and academic hospitals. METHODS: Policies and procedures for scheduling inductions and cesarean deliveries were implemented and patient and health care provider education was provided. Outcomes for scheduled singleton deliveries at 34 weeks of gestation or higher were submitted through a web-based data entry system. The rate of scheduled singleton elective early-term deliveries as well as the rates of early-term medically indicated and unscheduled deliveries, neonatal intensive care unit admissions, and singleton term fetal mortality rate were evaluated. RESULTS: A total of 29,030 scheduled singletons at 34 weeks of gestation or higher were delivered in 26 participating hospitals between January 2011 and December 2011. Elective scheduled early-term deliveries decreased from 27.8% in the first month to 4.8% in the 12th month (P<.001); rates of elective scheduled singleton early-term inductions (72%, P=.029) and cesarean deliveries (84%; P<.001) decreased significantly. There was no change in medically indicated or unscheduled early-term deliveries. Neonatal intensive care unit admissions among scheduled early-term singletons decreased nonsignificantly from 1.5% to 1.2% (P=.24). There was no increase in the term fetal mortality rate. CONCLUSION: A rapid-cycle process improvement program substantially decreased elective scheduled early-term deliveries to less than 5% in a group of diverse hospitals across multiple states. LEVEL OF EVIDENCE: III.